Ask the doctors: Managing lymphedema takes sustained effort, self-care

Dear Doctor: I’m 26 years old and have been diagnosed with lymphedema in all four limbs. I work out for an hour every morning and am physically active. What else can I do to help my lymphedema?

Dear Reader: Lymphedema is the swelling that occurs in the arms, legs or other parts of the body when the lymphatic system is not functioning properly. It’s most common in cancer patients who have had lymph nodes either removed or damaged during surgery or treatment. Swelling caused by injury to the lymphatic system is known as secondary lymphedema. When the swelling occurs independent of surgery or other damage, as in your case, the condition is known as primary lymphedema.

The lymphatic system, which is part of the immune system, is a circulatory system that includes all the tissues and organs that produce, store and carry white blood cells. A crucial part of this system is the network of lymphatic vessels that serve tissues throughout the body. Similar to capillaries, these are thin-walled tubes that drain fluid from the tissues and carry it to the lymph nodes. Unlike capillaries, however, which have the force of the heartbeat to move the blood within them, the lymphatic system is largely dependent on muscle movement to keep things flowing.

The type of lymphedema you have is quite rare. It’s an inherited condition in which the lymph vessels have not formed properly. As a result, the protein-rich lymph collects in the layers of soft tissue beneath the skin. This causes swelling in one or both legs, one or both arms, and can also affect the face and trunk.

When you have lymphedema, it’s important to seek professional care. The condition puts you at higher risk of developing infections of the skin and underlying tissues, which in turn can lead to abscesses, ulcers and tissue damage. Something as simple as a scratch or cut or insect bite can lead to serious infection.

There is no known cure for lymphedema, and no FDA-approved medication. However, complete decongestive therapy, also known as CDT, is an important tool in controlling the condition. In CDT, a lymphedema therapist leads you through a comprehensive program that includes manual lymphatic drainage, bandaging, the use of compression garments and self-care.

Manual lymphatic drainage, performed by the therapist, uses a feather-light touch to move lymph from the tissues and direct it back into the lymphatic vessels. Compression garments, which are made from flexible fabrics, keep a steady pressure on the affected limb and keep lymph moving.

Self-care includes protecting your limbs from cuts, scrapes, insect bites, overuse and extreme temperatures. Maintaining a healthy body weight is important in managing lymphedema. So is regular exercise, which you’ve already incorporated into your life. Be sure to run the specifics of your routine by your lymphedema therapist.

Managing lymphedema takes sustained effort and attention. That’s why, once again, we’re going to urge you to work with specialists in the field. For help finding a lymphedema therapist, visit the National Lymphedema Network at lymphnet.org.